Our community’s premier networking event for immersive learning and community building
Our biennial FSHD Connect Conference is an amazing opportunity to meet hundreds of patients and families, as our leading thinkers share the latest in medical management of FSHD and exciting advances toward treatments. Breakout sessions will cover how to cope with practical and emotional transitions, caregiving, advances in assistive technologies, “accessibility hacks,” physical therapy and exercise, surgical strategies, breathing, swallowing, wellness, and more. You won’t want to miss the CureFSHD Banquet on the evening of June 9.
The conference will be held at the Flamingo Las Vegas hotel and resort. Las Vegas has inexpensive, non-stop flights from numerous cities, excellent accessible public transportation from the airport to the Strip, and large numbers of ADA-compliant hotel rooms.
Needs-based scholarships and discounted hotel rates available!
Dear FSH Society,
I originally thought that there was NO WAY I could ever afford to attend the conference this year when I first looked at the information made available online, or in the mailer that I received. I wanted to act as soon as I heard as to get the best options available for my financial situation.
Unfortunately, the first day I received the mailer, and the online invitation, originally there were no links listed in the mailer, or online to make reservations to stay at the Flamingo with the FSH Society special conference rates. If I also remember correctly, what was there was incomplete when I clicked on the link. Instead I checked hotel prices my self throughout the Las Vegas area looking for the best rates I could find. The prices at the Flamingo without a special rate were astronomical, so I figured even a special rate would be far beyond what I could afford. There were scholarships mentioned in the information but at the time, no form was made available to download to read about the specifics. Again, I abandoned the idea of going to the conference yet another year.
However, when I decided to look into it again today, I clearly found the Flamingo link for special rates, and the scholarship pdf application. After being able to review ALL of the information NOW available, I was ABSOLUTELY THRILLED to discover how affordable the FSH Society had negotiated down such an affordable rate with the Flamingo for us, and I was thoroughly shocked after reading the scholarship information !!!
Please give my whole hearted thanks to ALL at the FSH Society who worked so hard to make it possible for those of us that thought it to be impossible to attend this event. Every year since it started, I have read about this event, only to abandon the idea because of the cost.
I haved lived in the Salt Lake City area for over 20 years, and have wanted to network with others with FSHD to start an FSH group here so that we could all connect and give support and education to one another. I have also thought that maybe being able to attend the annual FSH conference would help me to network and facilitate such actions here in Utah. However, today when I saw the COMPLETE INFORMATION was now available, the deadline for scholarship applications, March 1st, has already passed.
Please kindly accept my suggestion that next year the Society organize the information they put together so that from the beginning of publication on the web and through mailers, ALL of the information is complete including links and any necessary pdf files needed for download. This will make a huge difference to those who need and want to plan ahead to attend.
I look forward to hopefully being able to attend the conference next year.
Sincerely yours,
Ruth Shaw
West Jordan, UT
Thank you for your thoughtful feedback. We wanted to get an initial notice out as soon as possible, even before all hotel and scholarship details had been finalized, so that people could save the date, but acknowledge that this might be the only time people will look at the information, and they may get discouraged by the potential cost. We’ll keep working to improve our service to our members.